Stuttering Awareness
The Stuttering Information Centre of Denmark
Per Fabæch Knudsen, M.A., Director
In Denmark examination and treatment of stuttering is free and every stutterer has a right to receive treatment if he or she needs it and wants it. The treatment of stuttering has for many years been decentralised to speech therapists in the counties for adults, and in the municipalities for children.
The education in speech pathology takes place at the Royal Danish School for Educational Studies and the University of Copenhagen. Unfortunately stuttering has a very small place in the study of speech pathology.
This factor, together with the fact that many speech therapists treat very few stutterers per year, often results in a of lack of knowledge and experiences among speech therapists and among semi-professionals - and also in big differences in the quality of treatment offered across Denmark.
No Institutions see it as an aim to give the speech therapists special training in fluency disorders. And there are no places where speech therapists can be supervised if they have problems with treating a stutterer. Furthermore, no Institution has been given the task of passing on knowledge about stuttering and people who stutterer, to the public in general, to public institutions, to semi-professionals such as paediatricians, visiting nurses, nursery teachers and teachers, to associations or ministries.
All this means that too little has been done nationwide in the stuttering area for many years resulting in a lack of knowledge amongst stutterers, professionals, semi-professionals and society in general. - And that is also the case for other areas in the handicap field.
In 1993 the Ministry of Social Affairs and the Council of Counties in Denmark therefore wanted to establish Information Centres in specific areas of the handicap field - areas with a strong need for knowledge and dissemination of information. The centres were to collect, adapt, develop and disseminate information about the actual handicap.
The above was part of the background for establishing The Stuttering Information Centre of Denmark. The centre started on January 1, 1994. It is nationwide and has a yearly budget on approximately 1.7 Million Danish Kroner paid by the Counties in Denmark. There are 3 full time employees and 1 part time employee at the center. The office is in Copenhagen.
In the following I will first give an overview of the most important work carried out at the centre, namely "dissemination of information about stuttering". Secondly, I will talk about 2 concrete projects we have worked on at the centre, where the main aim was to provide semi-professionals with information about stuttering and provide more awareness about stuttering.
DISSEMINATION OF INFORMATION
The main purpose of the centre is dissemination of information. We want to raise awareness and knowledge of stuttering within society in general. Therefore we consider it very important to educate professionals, semi-professionals and the public in general about stuttering and to make them more aware of stuttering.
We have different target groups and we use different methods to reach the target groups.
The target groups consist of multiple recipients. I have listed the recipients below:
Recipients:
The methods of reaching the recipients are as following:
Different means:
We send the newsletter free of charge to all the local "Pedagogical Psychological Counselling offices" (the part of the Danish school-system where all kind of pedagogical and psychological problems children between 0-18 years face are taken care of) and Speech Institutes (which offer help to all persons over 18 years with speech and language-problems) where speech therapists work.
In addition, professionals, semi-professionals, consumers and others can receive our newsletter free of charge if they wish.
The newsletter is a very important part of the dissemination of information. Partly because the content of the newsletter is very relevant for the recipients, and partly because it comes regularly (4 times a year). The content can consist of information about workshops, a list of national and international workshops and conferences, book reviews, reviews of the publication "Journal of Fluency Disorders", and ar-
ticles about other relevant subjects, and more.
Other methods of reaching the professionals are workshops, 1-day conferences, booklets, articles, telephone, e-mail etc.
The methods of reaching the - in relation to stuttering - "semi-professionals" (for example, visiting nurses, nursery teachers, teachers and paediatricians) is carried out mostly through leaflets, booklets, articles, 1-day conferences, telephone etc. These recipients are very important, because they often are the first "professional" person the parents ask about what to do if their child stutters. So we put much effort in educating the "semi-professionals" in stuttering issues (see later).
The methods of reaching the other recipients is mainly through leaflets, articles, the media, telephone etc.
You can say that we have two ways of passing on information: in the first way we take the lead. Here we inform people about stuttering issues through newsletters, booklets, articles and so on. The receivers of this information haven’t directly asked for information at that moment - we just provide them with it because we think they may need it or want it. In the second way the recipients take the lead. They call us by telephone and ask for information or help about a specific problem. We then provide them with information we have or help we can give. In some instances one way of passing on information is more common than the other.
PROJECTS
I now will talk about 2 projects we have carried out at the centre. The first project is a project about communicating knowledge about stuttering to visiting nurses, child-minders and nursery teachers. The second project is a about stuttering and employment.
As I mentioned before there is a lack of knowledge about stuttering among the semi-professionals in Denmark. The aim of the first project therefore was to make a model speech therapists could use in their education of visiting nurses, child-minders and nursery teachers, who very often are the first persons parents talk to when concerned about their child’s speech. The purpose of the education of these semi-professionals was to ensure that they were able to provide parents with the first very important information about stuttering, and that they should be so knowledgeable about the onset of stuttering that they could refer the child and the parents to a speech therapist if needed.
We obtained funding for the project from the Ministry of Social Affairs so we were able to employ a speech-therapist full-time for half a year to work on the project. I was responsible for the project to the Ministry of Social Affairs so I closely followed the work of the speech therapist and with close supervision, including many discussions, during the project period.
The speech therapist was employed at the "Pedagogical Psychological Counselling-office" in a municipality of Funen (an Island in the centre of Denmark) and as
rented by the Stuttering Information Centre of Denmark to carry out the project. She had an office at her original workplace and also worked on the project from there. One or two times a month the Speech Therapist and I met to progress and discuss the details of the project.
The project consisted of developing and producing a model for communicating knowledge about stuttering to visiting nurses, child-minders and nursery teachers, a model which could be used by all Danish speech therapists, and very importantly a model which was useful for and practicable for the target groups.
The speech therapist found that a course of 3 hours duration was the right length to work with. In this 3 hour course the speech therapist was able to provide the semi-professionals with information about the onset of stuttering, the differences between the onset of stuttering and normal dysfluencies, how the child could be
handled in the daily life if he or she had begun to stutter, and finally, how the referral procedure worked.
The speech therapist also found that a course lasting longer than 3 hours was difficult for the visiting nurses, the child-minders and nursery teachers to attend. A 3 hour course could be placed either in the afternoon or in the evening. When organised for the afternoon the semi-professionals were able to arrange substitutes or cover for their jobs.
A year after the project the speech therapist offered the visiting nurses, the child-minders and nursery teachers a "brush up" course. The reason for this is, that when you received new information on a subject, time is needed to put the new knowledge into practise. When you have practised for a while you could discover some problems and questions you need answers to, so the "brush up" course was a good place to receive these answers.
When the speech therapist had finished the project she wrote a report about the model of communication of knowledge on stuttering. This report was printed and mailed free of charge to all the "Pedagogical Psychological Counselling-offices" in Denmark, more than 200. This meant that practically all Danish speech therapists have the possibility to use the report in developing their own courses for the
visiting nurses, the child-minders and nursery teachers in their municipalities. From the feedback we have received, we know the model of communication of knowledge has been used in many locations in Denmark. Furthermore, many speech therapy students, visiting nurses and nursery teachers have bought the report (we sell the report for the cost of the printing), so we can say, that the information we want to communicate, namely the importance of early intervention and the importance of knowledge of stuttering for the visiting nurses, the child-minders and nursery teachers, is very much spread in Denmark.
STUTTERING AND EMPLOYMENT
The second project was about stuttering and employment. In fact, it was about stuttering, epilepsy and employment because we carried out the project together with the Information Centre of Epilepsy in Denmark. The reason for this was, that both handicaps are "hidden handicaps" and some of the problems PWS and people with epilepsy face are similar. Another reason was, that by co-operating with another Information Centre we were able to carry out a more comprehensive project and by this obtain more reliable results.
The purpose of the project was to investigate employers' attitudes towards people who stutter and people with epilepsy, and to investigate the experiences of peoplewho stutter and people with epilepsy with respect to the work market.
The Stuttering Information Centre of Denmark employed Hermann Christmann to manage the part of the project concerning stuttering. He has, at a previous ELSA-meeting in Fakse Ladeplads, Denmark, presented the results of the project, so I will only say a little about the results as an prelude to what I will talk about: the dissemination of the knowledge gained from the project.
Questionnaires were returned from 721 employers, 85 people who stutter and 77 people with epilepsy. Selected for an interview were 16 employers, 4 of whom stuttered and another 4 of whom had epilepsy, 11 people who stutter and 8 people with epilepsy.
If we only look at stuttering (and "forget" epilepsy), 21 percent of the people who stutter reported having been put down for a job because of their stuttering. 37 percent reported stuttering being taken into consideration when deciding their vocation and education. Even where stuttering had not been taken into consideration when choosing a vocation many people who stutter reported that their stuttering was influencing their career in a way that it might make it difficult to get another job, or might make it difficult to get a job as a trainee, which is a requirement for working in certain vocations. On the job, the people who stutter accomplished the same tasks as their colleagues, but they felt that in many cases their stutter was cumbersome and hence they felt that they had to work a little harder than they would have had to if they did not stutter.
42 percent of the employers held the opinion that people who stutter were not capable of accomplishing certain jobs in the company, especially "communicative" jobs, some of the specific jobs mentioned were working as a receptionist, a salesman - especially selling by phone, a teacher, a manager, and a person representing the company. 11 percent of the employers reported having one or more persons who stutter as employees, these employers were more positive towards employing a person who stutters in the "communicative" jobs than were those employers who had no experience with people who stutter as employees. Virtually none of the employers reported any problems having a person who stutters as an employee.
When the project was completed we held a conference where politicians, handicap consultants from the job centres, the press, employers, speech therapists and others were invited. At this conference the results of the project was discussed. We had expected a big interest in the conference from the press, but we were a little disappointed because only a few reporters came to write about the conference.
After the conference we discussed how we could spread the information we wanted, namely that stutterers in general are as good employees as non-stutterers and that employers who don’t want to employ stutterers mainly do this because of prejudices and ignorance.
We therefore decided to make a nationwide campaign, where Hermann Christmann at a county level would inform employers, the local politicians, the local job centres, the local press and more, about our viewpoints and experiences from the project. He did it over a 2 month period and held 14 meetings (one in each county). Some of the meetings were organised together with the local Speech Institute and some of the meetings were organised together with the local handicap-consultant.
A typical meeting had between 10-15 participants. On a few occasions a politician or an employer came to listen to our information. Most of the participants were
people from the local job centres, speech therapists, stutterers and reporters from the local press.
So you can say that we failed in getting in touch with some of the very important persons we wanted to get in touch with: the politicians and the employers. But we had some very good meetings where the information and attitudes were disseminated, and due to the local press we had a lot of information about stuttering and employment in the newspapers in that 2-months period.
Simultaneously we co-operated with a free-lance reporter who was interested in writing about our project. She wrote several articles to professional papers about stuttering, the problems stutterers face when they seek jobs, and about the prejudices of employers. She also wrote about some experiences of the stutterers from the project, of whom many could tell they have jobs which some of the employers in the survey had said stutterers were not able to perform.
During the project we also produced a leaflet about stuttering and employment, which we sent to all Speech Institutes, job centres, the unions, the professional papers and all the organisations of the employers in Denmark. This leaflet provided information on stuttering, the problems stutterers face, and about stuttering in the workplace. It also gave some advice to employers and colleagues of stutterers.
In addition, during the project a local Danish TV station made a short programme (with Hermann Christmann as a consultant) about stuttering and employment. This programme also disseminated the information we wanted to give.
So all things considered I think we have been able to spread out the information, we wanted to, that stutterers in general are as good employees as non-stutterers and that the employers must look at the qualifications, not the impairment. And I also think we have been able to make employers, stutterers, and the public in general more aware of the problems stutterers face when they seek jobs, and more aware that stuttering doesn’t have to be a problem in a certain job.
Of course there is still a long way to go, but by this project and the knowledge we have gained from it, I think we are "dressed" to continuously inform employers, politicians, job centres and others about ‘stuttering and employment’ issues.
FINALLY
As I said in the beginning of my presentation, the main aim for the Stuttering Information Centre of Denmark is to spread information about stuttering and by this make a improve in awareness about stuttering among professionals, semi-professionals and in the public in general.
I think - or more precisely: I know! - that the work the centre has carried out has caused a higher level of awareness and knowledge about stuttering in Denmark. But we still have a long way to go - and a lot of work to do. - So, hopefully, we won’t become unemployed for many years to come!